Writing this towards the end of this year’s Dementia Awareness Week it is clear to me that while society is beginning to talk about dementia, all too often people with the condition remain isolated and cut off from their local community. Every time I hear from a person with dementia that since their diagnosis good friends have become former friends who cross to the other side of the street when they see them, I am reminded of one of the most painful emotions experienced by many with the condition – loneliness.
Dementia and loneliness are intricately linked. By its very nature, dementia can compound feelings of social isolation and loneliness as the world becomes increasingly fractured and memories of recent social contact are quickly lost. Meanwhile caring for a person with dementia can result in a different kind of loneliness as the dynamics of a family shift and relationships change. It is therefore of little surprise that research by Alzheimer’s Society has found that people with the condition are more at risk of loneliness than the general population – with this risk increasing if the person with dementia lives alone.
Our report, Dementia 2013: The hidden voice of loneliness, laid bare a systemic problem with 62 per cent of those living alone with dementia saying they felt lonely and a third of all respondents (35 per cent) reporting to have lost friends after receiving a diagnosis. A reluctance to leave the house for fear of getting lost or confused in public, loss of confidence and the stigma surrounding the condition were all found to be factors contributing to loneliness.
Further research by the Society has found that a large proportion of the general public are not sure that they could have a conversation with a person with dementia. Nearly a fifth of respondents (19 per cent) to a YouGov poll said they do not know if they would feel comfortable talking to a person with dementia, while a further 16 per cent said they would not feel comfortable. This highlights how stigma and fear of dementia can rob individuals living with the condition of the everyday social interaction many of us take for granted.
But we can all do something to break the link between dementia and loneliness. One way is by becoming a Dementia Friend. Alzheimer’s Society Dementia Friends initiative involves changing attitudes and behaviour towards a condition that can be frightening and difficult to comprehend. It encourages tolerance and thoughtfulness as a Dementia Friend tries to see the world through someone else’s eyes. Our aim is that by 2015 we will have a million people with a changed attitude and an improved understanding of what it feels like to live with the condition so that we can begin to breakdown the stigma of dementia which so often leads to exclusion and loneliness. It’s easy to become a Dementia Friend – all you need to do is come along to an hour long information session in your local area or watch a new online video.
Everyone needs human contact for comfort and security, and to feel involved and active in everyday life. For people with dementia, having a helping hand can be all they need to catch a bus they’ve felt too scared to use on their own or to enable them to leave the house to go to the shop. With cases of dementia in Western Europe set to double by 2050, bringing about change in the lives of people with the condition is not something we can just leave to governments. All of us have a part to play. We can, and must, work to alleviate the burden of loneliness among people with dementia.
If you would like to read the full essay by Jeremy Hughes, or any of the other essays in our ‘Alone in the crowd: loneliness and diversity’ collection please follow this link.